Hey Everybody...
We want to let you know tonight the we are living proof of the POWER OF PRAYER! The test results came back today and Parker DOES NOT have to have brain surgery! There is absolutely NOTHING wrong with his Vein of Galen and there is not one threat of brain aneurysms! If that doesn't tell you there is a God then I don't know what will and I am too much beside myself to convince you otherwise! We are living testimonies tonight that the prayers that have been lifted to God for our little man are ANSWERED! Our greatest fear of the unknown and 19 months of worry and concern ended today...and we thank God for that. We do need to let you know that the right transverse sinus (which is in very close proximity to the vein of galen) is dilated two times the size that it should be and that is what they were seeing on both MRI's before. They will scan Parker again in 5 months just to check all of the dilated areas in his brain to make sure that they are not growing....but as for Willis and I...we know that our God... the God of Mercy and Grace has a plan that is so profound for Parker. We know full well that the master physician has our little man's life in the palm of his hands and He hasn't let go of us yet and He stands beside me tonight as I am writing to you giving me the words for this post as a full testimony and witness of His precious love! God we thank you tonight for the love and encouragement that you have placed on our family during this unfamiliar time in our lives....we thank you for the opportunity to love a little boy named Parker...who grew in my womb, had cysts on his brain, a hemorage on his brain after birth, that proved the doctors wrong when they claimed he didn't have a corpus collosum, was born with multiple holes in the septal wall of his heart the size of his tiny little fist, endured open heart surgery at 4 months of age, has dilated ventricles til this day but because of you alone God....YOU are who we thank tonight. We have praised you in our storms and will continue to be a witness to your throne for those who need to hear of your name JESUS! We love you God and we are blessed to have a heavenly Father who hears us even when we whisper of your name......
Thank you all so much for your prayers! We honestly felt everyone of them today...and it means so much to our family. Now....we are off to plan Parker's very 1st birthday and you can only imagine how excited we are to be able to do this....what a speacial day that will be!
Love In Christ....
The Crafts
Thursday, July 22, 2010
Tuesday, July 20, 2010
A Brief Update...
Hey Everybody...
Just wanted to let you all know that they have moved Parker's MRA/MRV to tomorrow Wednesday July 21st at 11:00. I haven't had alot of time to update our blog to let you know...so please be praying for us in the morning. Our neurologist has set an appointment for the results on Thursday July 22nd at 1:40 so please keep us in mind for that appointment as well. Parker's table time for tomorrow isn't until 12:30 and he will have been without food for six and a half hours so pray that he will do well with that. I know we have said this a million times but thank you all so much for your prayers and we will be keeping you posted as soon as we know something.
Love In Christ...
The Crafts
Just wanted to let you all know that they have moved Parker's MRA/MRV to tomorrow Wednesday July 21st at 11:00. I haven't had alot of time to update our blog to let you know...so please be praying for us in the morning. Our neurologist has set an appointment for the results on Thursday July 22nd at 1:40 so please keep us in mind for that appointment as well. Parker's table time for tomorrow isn't until 12:30 and he will have been without food for six and a half hours so pray that he will do well with that. I know we have said this a million times but thank you all so much for your prayers and we will be keeping you posted as soon as we know something.
Love In Christ...
The Crafts
Friday, July 9, 2010
"Whenever I am afraid I will trust in you... In God I have put my trust...I will NOT FEAR!" Psalm 56:3
Hey Everybody...
What a day today has been! Over the last week Willis and I have been constantly educating ourselves on "the vein of Galen" through hours of internet research! Every case study that we read online tells us that it is a malformation that takes place during the sixth and eleventh week of gestation. It is normally seen in association with severe hydrocephalis and conjestive heart failure. Most babies that have a malformation in the vein of Galen are always detected intrauterine and most all never see two days here on earth, because their little bodies can't handle how hard it's working to stay alive. With this in mind, I couldn't help but retreive the ultrasound images from Dr. Shipley (my high risk OBGYN) while Parker was still forming in my womb. Parker's brain has been under such scrutiny for the last 19 months that I just knew something would have been missed on those images. Unfortuntely, they only seemed to display the posterior ventriculomegaly and that his corpus collosum was there...which we are extremely thankful for! But he did mention that Parker's ventricles should be a 1/3 of the size that they are, and he can't really tell us why they are dilated and what could have caused it to begin with. You all know that I am a mom of many questions and a very proactive parent.....and when you tell me something is wrong with my babies...the words "rare" and "brain" don't sit well with me. So....I called another meeting with our neurologist and saw him this morning with alot of questions. My primary question to Dr. Morgan last week was "why was this malformation not mentioned in the first MRI report?" Dr. Morgan let us know that Parker's head circumference had grown one cm since the last scan and they were able to see more because of the head growth. This still left us confused when if in fact he has a true malformation then it would have presented itself before now....possibly. So this raised enough question in Dr. Morgan to have the head doctor of Radiology take a second look at both MRI's comparitively and let us know if they missed something.....and that they did. The possible malformation was clearly on the first MRI and the second as well, so we were right. Thank God they looked again because the first MRI notes from the radiologist read "Follow-up MRI could be considered in one year's time to evaluate for continued appropriate interval myelination pattern" the second , taken only one month later reads "Large caliber straight sinus, Vein of Galen, and very large caliber right transverse sinus with developmentally hypoplastic or absent left transverse sinus, there may be accompanying enlargement of the left posterior cerebral artery, Findings are concerning for an AVM/AV fistula. These may reflect large collateral venous channels. CTA or even MRA for further evaluation." BIG difference in the reports right? Before our appointment this morning Willis and I found that most all malformations were found through the MRA (magnetic resenance angiogram). This is a study that focuses solely on the arteries of veins. Dr. Morgan has agreed, with us, that this is a much better option as opposed to the CT-Angiogram. I did ask Dr. Morgan this morning if there was any other option for treatment if Parker does have a malformation and he said "no...surgery is the only option". Not to mention Dr. Morgan has only seen 2 malformation vein of galen cases in 2 years....and we are number 2. It never makes you feel all that great as a parent when a specialist tells you that there are not other options....followed by...."Because it is so rare you probably know more about the vein of galen than I do at this point". So he encouraged us to go home and continue to learn more about it, and we would go over the formal results of the MRA/MRV four or five days after the scan was given. Other than that he would call us himself if there was need for urgent concern. Our date for the procedure is July 23rd @ 8:30am. Please continue to pray hard about our little man's brain. I completely broke down last night after reading several case study on post surgical results and it upset me so bad that I am not even going to share them with you. I told Willis laying in bed last night that I feel like we are constantly having to fight a battle to keep Parker here with us....and it wares you down so bad at times. I know in my heart that God has such mercy and grace for his children. I am just so ready for a doctor to look us in the face and say....All of the tests are negative....Take you baby home and enjoy him....Everything looks great! Unfortunately, we are still surrounded by words that have haunted us for the last 19 months.... unanswered questions, rarities and medical anomalies! Sometimes in our lives....we don't get the answers we want when we want them....but we have to be reassured in knowing that God will answer them in HIS time and in HIS time only....and that is better that mine because HIS is PERFECT!!!
Love In Christ....
The Crafts
What a day today has been! Over the last week Willis and I have been constantly educating ourselves on "the vein of Galen" through hours of internet research! Every case study that we read online tells us that it is a malformation that takes place during the sixth and eleventh week of gestation. It is normally seen in association with severe hydrocephalis and conjestive heart failure. Most babies that have a malformation in the vein of Galen are always detected intrauterine and most all never see two days here on earth, because their little bodies can't handle how hard it's working to stay alive. With this in mind, I couldn't help but retreive the ultrasound images from Dr. Shipley (my high risk OBGYN) while Parker was still forming in my womb. Parker's brain has been under such scrutiny for the last 19 months that I just knew something would have been missed on those images. Unfortuntely, they only seemed to display the posterior ventriculomegaly and that his corpus collosum was there...which we are extremely thankful for! But he did mention that Parker's ventricles should be a 1/3 of the size that they are, and he can't really tell us why they are dilated and what could have caused it to begin with. You all know that I am a mom of many questions and a very proactive parent.....and when you tell me something is wrong with my babies...the words "rare" and "brain" don't sit well with me. So....I called another meeting with our neurologist and saw him this morning with alot of questions. My primary question to Dr. Morgan last week was "why was this malformation not mentioned in the first MRI report?" Dr. Morgan let us know that Parker's head circumference had grown one cm since the last scan and they were able to see more because of the head growth. This still left us confused when if in fact he has a true malformation then it would have presented itself before now....possibly. So this raised enough question in Dr. Morgan to have the head doctor of Radiology take a second look at both MRI's comparitively and let us know if they missed something.....and that they did. The possible malformation was clearly on the first MRI and the second as well, so we were right. Thank God they looked again because the first MRI notes from the radiologist read "Follow-up MRI could be considered in one year's time to evaluate for continued appropriate interval myelination pattern" the second , taken only one month later reads "Large caliber straight sinus, Vein of Galen, and very large caliber right transverse sinus with developmentally hypoplastic or absent left transverse sinus, there may be accompanying enlargement of the left posterior cerebral artery, Findings are concerning for an AVM/AV fistula. These may reflect large collateral venous channels. CTA or even MRA for further evaluation." BIG difference in the reports right? Before our appointment this morning Willis and I found that most all malformations were found through the MRA (magnetic resenance angiogram). This is a study that focuses solely on the arteries of veins. Dr. Morgan has agreed, with us, that this is a much better option as opposed to the CT-Angiogram. I did ask Dr. Morgan this morning if there was any other option for treatment if Parker does have a malformation and he said "no...surgery is the only option". Not to mention Dr. Morgan has only seen 2 malformation vein of galen cases in 2 years....and we are number 2. It never makes you feel all that great as a parent when a specialist tells you that there are not other options....followed by...."Because it is so rare you probably know more about the vein of galen than I do at this point". So he encouraged us to go home and continue to learn more about it, and we would go over the formal results of the MRA/MRV four or five days after the scan was given. Other than that he would call us himself if there was need for urgent concern. Our date for the procedure is July 23rd @ 8:30am. Please continue to pray hard about our little man's brain. I completely broke down last night after reading several case study on post surgical results and it upset me so bad that I am not even going to share them with you. I told Willis laying in bed last night that I feel like we are constantly having to fight a battle to keep Parker here with us....and it wares you down so bad at times. I know in my heart that God has such mercy and grace for his children. I am just so ready for a doctor to look us in the face and say....All of the tests are negative....Take you baby home and enjoy him....Everything looks great! Unfortunately, we are still surrounded by words that have haunted us for the last 19 months.... unanswered questions, rarities and medical anomalies! Sometimes in our lives....we don't get the answers we want when we want them....but we have to be reassured in knowing that God will answer them in HIS time and in HIS time only....and that is better that mine because HIS is PERFECT!!!
Love In Christ....
The Crafts
Sunday, July 4, 2010
Thursday, July 1, 2010
"Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace in the time of need" Hebrews 4:16
Hey Everybody...
First of all I would like to start out by saying thank you to every single one of you that are praying for Parker. There is power in prayer and we are living proof of it. Willis and I just got home from the neurology appointment with Dr. Morgan and the results are as follows. The posterior right ventricle is still dilated but there has been NO CHANGE or GROWTH to that ventricle. This is "HUGE" which is straight from the mouth of Dr. Morgan. He seemed very encouraged by the static nature of the ventricle. In his opinion, as long as the ventricle remains static we won't have anything major to be concerned about. BUT....we do have something new to be concerned with. In the radiology report, it mentions a level of concern for a new area in Parkers' brain, and it is called "the vein of Galen". It is really hard to describe to you, without showing you, where it is in the brain. But please feel free to google it if you'd like. Primarily the vein of Galen is a cluster of veins that are tied into the venous system. Parker's MRI does show a possible malformation in this region. The only way to figure out what those veins are doing, would be to perform a CAT scan (which scares me with radiation, of course) and allow the dye to show the movement of the blood vessels and determine at that time the severity of Parker's case. When blood vessels swell or become knotted, the pressures within the vessels may rupture and cause slow bleeds in Parker's brain. This, of course, is what we are trying to catch before it worsens. Dr. Morgan did tell us that we do not have an emergency situation to the best of his knowledge. He does want for Parker to have the CAT scan within the month, so that Dr. Lenwood Smith (Parker's neurosurgeon) can look more closely at the options for treatment. If in fact the results show a true malformation of these veins, there are surgical procedures that can be performed to either remove the knotted portions of veins or removed the veins that are causing the problem. Dr. Morgan then let us know that it is a far more invasive surgery as opposed to the "shunt" primarily because you are dealing with "veins" and that can get tricky. He did tell us that there are some definate risks at hand. If there is a malformation in the vein of galen and nothing surgically is performed to relieve the pressure on those veins, then it would cause a "brain aneurysm" at some point in Parker's life. This was a little scary to hear...but how wonderful it is that Parker's doctor's may have found something that could potentially lenghthen his life span here on earth with us. And for that we are extremely thankful! SO....We are not out of the woods yet, but Willis and I are continuously encourged by God's GRACE and look forward to spending everyday that God allows us with our precious little man. Parker is such an ennormous blessing to our family. Willis and I are continuing to be patient in the midst of our storms and know that Parker is safe a the feet of Jesus. "Therefore I say to you, whatever things you ask for when you pray, believe that you receive them, and you will have them" Mark 11:24-
Love In Christ...
The Crafts
First of all I would like to start out by saying thank you to every single one of you that are praying for Parker. There is power in prayer and we are living proof of it. Willis and I just got home from the neurology appointment with Dr. Morgan and the results are as follows. The posterior right ventricle is still dilated but there has been NO CHANGE or GROWTH to that ventricle. This is "HUGE" which is straight from the mouth of Dr. Morgan. He seemed very encouraged by the static nature of the ventricle. In his opinion, as long as the ventricle remains static we won't have anything major to be concerned about. BUT....we do have something new to be concerned with. In the radiology report, it mentions a level of concern for a new area in Parkers' brain, and it is called "the vein of Galen". It is really hard to describe to you, without showing you, where it is in the brain. But please feel free to google it if you'd like. Primarily the vein of Galen is a cluster of veins that are tied into the venous system. Parker's MRI does show a possible malformation in this region. The only way to figure out what those veins are doing, would be to perform a CAT scan (which scares me with radiation, of course) and allow the dye to show the movement of the blood vessels and determine at that time the severity of Parker's case. When blood vessels swell or become knotted, the pressures within the vessels may rupture and cause slow bleeds in Parker's brain. This, of course, is what we are trying to catch before it worsens. Dr. Morgan did tell us that we do not have an emergency situation to the best of his knowledge. He does want for Parker to have the CAT scan within the month, so that Dr. Lenwood Smith (Parker's neurosurgeon) can look more closely at the options for treatment. If in fact the results show a true malformation of these veins, there are surgical procedures that can be performed to either remove the knotted portions of veins or removed the veins that are causing the problem. Dr. Morgan then let us know that it is a far more invasive surgery as opposed to the "shunt" primarily because you are dealing with "veins" and that can get tricky. He did tell us that there are some definate risks at hand. If there is a malformation in the vein of galen and nothing surgically is performed to relieve the pressure on those veins, then it would cause a "brain aneurysm" at some point in Parker's life. This was a little scary to hear...but how wonderful it is that Parker's doctor's may have found something that could potentially lenghthen his life span here on earth with us. And for that we are extremely thankful! SO....We are not out of the woods yet, but Willis and I are continuously encourged by God's GRACE and look forward to spending everyday that God allows us with our precious little man. Parker is such an ennormous blessing to our family. Willis and I are continuing to be patient in the midst of our storms and know that Parker is safe a the feet of Jesus. "Therefore I say to you, whatever things you ask for when you pray, believe that you receive them, and you will have them" Mark 11:24-
Love In Christ...
The Crafts
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